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Bad herx (borrelia)

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Posted 4/15/2024 10:23 PM (GMT 0)
I am finding that as I kill off borrelia and break up the biofilm, the remaining bacteria seem to be more exposed and I get increasingly bad herxes from small doses of meds.

One day last week, I took one 500 mg dose of valacyclovir, one dose of 100 mg minocycline, one dose of 500 mg azithromycin, and one 10 mg loratadine pill. That was all I took that week. I had taken one dose of 500 mg valacyclovir the week before.

I had no immediate reaction, but a few days later got a huge herx.

I was tired, but could not sleep much as I kept waking up to pee. My blood pressure got dangerously low and I felt like I was going to pass out when I stood up. I also got a slight headache from the hyponatremia. I ate some really salty food, and drank a lot of water, and took a bunch of hydrocortisone (around 100 mg total, but not all at once) and I felt better for a few hours, and slept a bit, but then I got diarrhea and had to eat more salty food. This kept me up all night, and I slept most of the next day.

The urine is mostly clear, and occasionally cloudy, with very little yellow bilirubin. I have no signs of hemolysis or any other symptoms of bartonella or babesia, so this seems to be just borrelia die off.

I would think with all this die off that at some point the borrelia infection would be eliminated completely, but this has been going on for months and it just keeps coming.
Posted 4/16/2024 4:15 AM (GMT 0)

Quin said...
I am finding that as I kill off borrelia and break up the biofilm, the remaining bacteria seem to be more exposed and I get increasingly bad herxes from small doses of meds.

One day last week, I took one 500 mg dose of valacyclovir, one dose of 100 mg minocycline, one dose of 500 mg azithromycin, and one 10 mg loratadine pill. That was all I took that week. I had taken one dose of 500 mg valacyclovir the week before.

I had no immediate reaction, but a few days later got a huge herx.

I was tired, but could not sleep much as I kept waking up to pee. My blood pressure got dangerously low and I felt like I was going to pass out when I stood up. I also got a slight headache from the hyponatremia. I ate some really salty food, and drank a lot of water, and took a bunch of hydrocortisone (around 100 mg total, but not all at once) and I felt better for a few hours, and slept a bit, but then I got diarrhea and had to eat more salty food. This kept me up all night, and I slept most of the next day.

The urine is mostly clear, and occasionally cloudy, with very little yellow bilirubin. I have no signs of hemolysis or any other symptoms of bartonella or babesia, so this seems to be just borrelia die off.

I would think with all this die off that at some point the borrelia infection would be eliminated completely, but this has been going on for months and it just keeps coming.

Hmmm - have you treated babesia with Mepron or Malarone?
If not - it’s worth a try

I treated for over a year with a LLND and here in Canada he wasn’t licensed to prescribe antimalarials. I improved but still had a few symptoms.
Awhile down the road - I decided to go to a LLMD and started from scratch - which meant treating Babesia with Mepron or Malarone before re treating Bartonella.

It worked.

It’s worth a try?
Posted 4/17/2024 2:23 AM (GMT 0)
Yes I did try treating possible babesia, but I found that the mepron just hit bartonella. I also ran into problems with low folate from malarone, but mepron was fine.

https://www.healingwell.com/community/default.aspx?f=30&m=4338913
https://www.healingwell.com/community/default.aspx?f=30&m=4149533

I have no specific symptoms of babesia. Liver function is fine, and I have no signs of excessive hemolysis, so I don't know what I would be treating for.

I also have no symptoms of bartonella. Looking back through my old posts, the last time I had symptoms of bartonella was June 2022.

https://www.healingwell.com/community/default.aspx?f=30&m=4290706

I haven't had any bartonella relapses since then. Borrelia seems to be my only remaining infection.
Posted 4/17/2024 10:24 AM (GMT 0)
i wish it was as easy to know which infection is causing what

in practice i think there is a high degree or overlap
Posted 4/17/2024 7:38 PM (GMT 0)
Yikes!!
Have you been checked for low cortisol levels?
Some of your symptoms point to that possibility......
Posted 4/18/2024 3:43 AM (GMT 0)
Garzie: I do know what infection is causing what. Bartonella attacks the red blood cells, causing hemolysis and bilirubin, and I am not getting these symptoms. Also bartonella has a very distinctive smell, and I don't smell it.

I know it's borrelia. PCR tests confirm it's borrelia. My frustration here is that borrelia burgdorferi is easy to kill, and I know what drugs kill it, but after several years I still can't get rid of this infection because the herx is so bad and the bacteria form these hard lumps that are very difficult to break up.

RobWireGuy: Yes, that's why I took so much hydrocortisone. The problem is that the detoxing increases CYP3A4 which destroys the cortisol (hydrocortisone), and I need that cortisol to stop the salt loss and dehydration.
Posted 4/18/2024 6:15 AM (GMT 0)
“Also bartonella has a very distinctive smell, and I don't smell it.”

I did not have a smell when I had active bartonella.
Posted 4/18/2024 6:52 AM (GMT 0)
I know you can't smell it, but a lot of other people can!!

https://www.healingwell.com/community/default.aspx?f=30&m=4182332
https://www.healingwell.com/community/default.aspx?f=30&m=4148545&p=4

I think it smells a bit like asparagus pee, and some people just can't smell that.

https://www.medicalnewstoday.com/articles/314722
Posted 4/18/2024 10:49 AM (GMT 0)
Quin - i am not saying that you dont have lyme - i am just saying that although i wish it was the case - i do not think we can reliably know what infecting is causing which symptoms by the smell of our urine.

i don't wish to argue with you - if you have found something that you feel is working for you - that's great - i just think there is a high potential to get into a self confirming loop with these type of beliefs that do not necessarily help us steer the ship in the right direction in the long run.

these infections are called stealth pathogens for a reason - they may be present but not causing overt symptoms - or they may be present an disturbing the bodies immune system - but not causing the expected stereotypical symptoms

as an example - i definitely still have bartonella - you can see it in my blood - but my bilirubin is normal

so i would just urge you to keep an open mind
Posted 4/18/2024 2:55 PM (GMT 0)

Quin said...

RobWireGuy: Yes, that's why I took so much hydrocortisone. The problem is that the detoxing increases CYP3A4 which destroys the cortisol (hydrocortisone), and I need that cortisol to stop the salt loss and dehydration.

Sounds like you make be caught in a catch-22.
Use of steroids is often times contraindicated in the treatment of Chronic Lyme,
weakening the immune system, allowing Borrelia and its coinfections to take further hold of your body.
Even so, it is documented that Lyme can damage the Adrenal system, and steroids may be necessary.

In regards to antibiotics and other prescribed medications, these are very much a personal thing,
and success varies - be your own advocate in choosing any treatment regimen.
Posted 4/18/2024 3:26 PM (GMT 0)

Quin said...
I know you can't smell it, but a lot of other people can!!

https://www.healingwell.com/community/default.aspx?f=30&m=4182332
https://www.healingwell.com/community/default.aspx?f=30&m=4148545&p=4

I think it smells a bit like asparagus pee, and some people just can't smell that.

https://www.medicalnewstoday.com/articles/314722

Nope - I have a husband and who would have let me know.
Posted 4/18/2024 11:53 PM (GMT 0)
RobWireGuy: Yes, but my immune system is reacting very strongly to the die off (herx) so I actually need to reduce that a bit.

Hydrocortisone is the right choice here.
Posted 4/19/2024 4:04 PM (GMT 0)
you have been at this a while Quin and are obviously well versed - but just to share a word of caution

Dr Lindner's daughter tragically died recently - they had been using corticosteroids to try to manage her herx reactions - to make treatment more tolerable, and her life more manageable.

i don't recall all of details - but he seemed a very competent doctor - not prone to do anything rash - and still she had a v sudden and fatal overwhelming immune reaction of some sort that seemed to be caused by an unintended and unexpected reaction to the corticosteroids.
perhaps it was a phasing thing - or perhaps using the steroids allowed the infection to grow to a point beyond which the steroids could control the inflammation from it - and there was a sudden collapse.

i think she was using stronger corticosteroids than hydrocortisone - but even so - i dont think the risks or interactions of these drugs with chronic infections are well understood - and its clear there is the potential for severe and sudden ill effects.

there is a lot of animal studies that show pathogen counts of borrelia and other pathogens go up dramatically when corticosteroids are used - and there were human trials relatively early in the lyme disease story - which found long term outcomes were worse not better when steroids were used.

go carefully
Posted 4/20/2024 10:31 AM (GMT 0)
Dear Quinn,
you are older and more knowledgable and experienced than me. In what you are saying, I guess it is clear that there is an active bacteria, otherwise there would be no herx. I assume that the only way is to continue Abx according to what has worked for you. I have noticed that I got most depressed and despareted when I thought I have finally recovered and lyme and bart is over for me. When it relapsed I felt really bad. I have understood it is much better not to make any conclusions, if it is actually even possible, but keep on going in a simple and consistent way (according what seems to work). That is perhaps more from psychological aspect, of how one is responding, which is probably happening to all of us.
From medical point of view, I think that some persisters must somehow always manage to remain in you and re-emerge, again and again. I m wondering what type of pulsing abx did you do and for how long?
Yes, borrelia is easy to kill, but it seems that is different from it being completely eradicated and there tend to be stubborn persister residues, as documented eg here:

https://journals.asm.org/doi/full/10.1128/aac.00864-15

Thank you and all the best, B
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